First Follow-up visit with Doctor

First off, let me say this post rambles on, and I apologize in advance. It's been 25 days since I started CPAP, and I'm getting more and more comfortable with it, averaging about 7 hours a night. Without this forum, I would have definitely had much more trouble adjusting, but reading through so many great posts, I was able to answer many of my questions and I certainly know I'm not alone. Who knows more about sleep apnea than people who have sleep apnea?

Today was my first follow up with my doctor since the sleep study and since I took the machine home. It went ok, but I do feel a little silly, for lack of a better word. The doctor wanted to know how I was feeling, and I said much better-- in fact, I've been pleasantly surprised.

The doctor listened to me talk about feeling a big improvement in my outlook on life and energy levels, etc. and seemed a bit amused by my enthusiasm, or maybe I was imagining it; maybe he was just happy to hear it was working. Reading over my sleep study and glancing through the printouts from my CPAP machine, the doctor said I had a mild case of sleep apnea with only 17.5 AHI an hour and my oxygen levels dipped to 80%, which, he said, is enough to warrant treatment, but definitely not at all severe. I already knew my case was mild, from reading so many other people's experiences on the forum, so it didn't come as a shock.

My husband came along with me to the appointment, which I really appreciated, because he knows more about what goes on with me when I'm asleep than I do, since he was the one who noticed my excessive snoring and breathing cessations before the diagnosis was made. My husband told the doctor I seem so much more rested and have more energy and enthusiasm for life and I don't 'jerk' so much at night. (My legs aren't aching at night like they used to either, and my headaches are gone, which is such a difference---and I told the doctor that, too.)

The doctor said he was glad to hear things were going well, and hoped my health continued to improve. See you in 6-9 months.

So why do I feel a bit silly? I guess because my sleep apnea is so mild, I'm wondering if the improvements I'm feeling are all a figment of my imagination, like a placebo effect? If I wasn't all that bad to begin with, how can I say I'm feeling so much better now? Wishful thinking? But then, I also wonder if the sleep study was a bit skewed, since I had such a hard time falling asleep both times and they had to give me a sleeping pill. I know I didn't sleep as deeply as I do at home, and I wonder if that had any effect on the amount of apneas that showed up on the report? But then, the sleeping pill would probably have made the sleep apnea worse, since I was more or less medicated to fall asleep, which probably should have relaxed me more than usual, causing more events.

Reading this over, I think I need to hook myself up to my machine and get some rest, I sound like a sleep-deprived hypochondriac with delusional thinking, LOL and I apologize again. Am I feeling sorry for myself because I wasn't as bad off as I thought? No, not self-pity, just a bit of self-doubt. On a severity scale, my apnea was the equivalent of having an elephant standing on my shoelace compared to many people who have the same elephant literally standing on their chest.

Even though my case is very mild, I still believe I feel better, regardless if it's all in my head or not. Or I should say, ON my head, because that's where the mask goes.

An AHI over 15 per hour is considered moderate not mild. An O2 below 88% is concerning and should be investigated fully. You are evidently getting good therapy and reaping the rewards of that since you are feeling better. I, too, had an AHI of 17 and my O2 dropped to 76%. I've been on the machine since the last days of August and I am now just beginning to feel energetic. I did feel much more rested right away, and My AHI is always under 2.0. I wear an oximeter every so often and my O2 is perfect now whenever I check it.

When this therapy works well for a person with OSA is should be celebrated. There is no reason to feel 'silly' about your improvements. If you had left this untreated, you may have progressively gotten worse, lost your ability to think well, developed hypertension or had a stroke. Be thankful for the diagnosis and the quick turnaround you've experienced with your therapy.

Best wishes for continued good sleep and results!

Emilia, thank you for your response. I had a good night's sleep and feel much less paranoid this morning, which is a good thing. You are right about celebrating the improvements and not doubting their existence; I guess it was the doctor's bemusement that confused me. I do have hypertension and before CPAP therapy I was having trouble keeping it under control, even with new medication. Ironically, my high blood pressure is what led to the sleep apnea diagnosis, so I guess things do happen for a reason.

I also have to stop listening to friends and acquaintances who have told me they think the entire diagnosis of sleep apnea is merely a way to drum up business for doctors. One of the most skeptical people in my life is an in-law who insists he doesn't feel any better since his diagnosis of severe OSA with AHI's in the upper 90's. He's been using his machine since June 2010 and says he feels worse now than before as all he does at night is fight with the mask and the air pressures.

Since my case is much more mild than his and I've been using my machine only since the end of December and feel so much better, he finds it hard to believe the therapy is making the difference since he says it's not helping him one bit. Bluntly put, he thinks my 'improvement' is all in my head.

I told him I had some very rough nights too, and encouraged him to seek out help from his doctor and his DME and try as many different masks as it takes to get something he's comfortable with before he gets so frustrated that he finally gives up altogether. I also would have recommended this site to him, but he does not believe in computers either, so that's out. I can only lead by example.

Attitude is everything--and I guess it works both ways. If a person becomes close-minded and negative about CPAP therapy, I imagine they might not even notice significant health changes for the good since they are so focused on what they term the downside of being stuck with a machine for the rest of their lives. They can't see the forest for the trees. My in-law doesn't celebrate the fact he wakes up every morning, and with that many AHI's an hour before diagnosis, I was staring at him, wondering how he survived this long! It's a miracle, but he doesn't see it that way.

So, long story short, I intend to celebrate any and all improvements in how I feel, Emelia and let the naysayers believe what they want. Thank you for your reply!

Emilia summed it up nicely.

And this guy

flowergal3 wrote:he thinks my 'improvement' is all in my head.

I'd say he's jealous and, your'e right, you can only lead by example. It takes a lot of determination and hard work to make a go of this. Then again, all some people want to do is complain. Keep up the good work, celebrate some more, share when you can, and maybe eventually he'll come around.

I suspect that the reason you thought it "wasn't all that bad to begin with" before treatment is that apnea can probably come on gradually, making you slowly more and more sleep deprived, less functional, more symptomatic. It's really easy to chalk up some of the symptoms that go along with it to external factors-- job stress, challenges of parenting, natural aging, or whatever--and go on with life. I think it can happen so slowly, that you really don't know how bad you feel until suddenly the monkey is lifted off your back. And then, it's like "I can't believe I was carrying that thing around for so long, and I didn't even notice!!" Anyway, that's been my experience.

Also, on the issue of severity vs. having symptoms, please note one interesting conclusion as follows:

"OSA patients presenting with mild or moderate severity, and no major comorbidities will not necessarily have low levels of sleep or psychological disturbances."

Source: http://www.ncbi.nlm.nih.gov/pmc/article ... 010211.pdf

My apnea is ridiculously mild. No reduction in oxygen, only 5 AHI, although 13 on my back. I'm only aroused approximately 30 times per night from apnea and another 30 from PLMD.

My life is a mess due to sleep deprivation. Sure, I may be in waaaay better shape than some other people, but this is enough for me to not feel my best and that is all that matters in the end.

You feeling better is all that counts, who cares if someone else thinks you're silly (which, to be fair to the doc, is only an assumption on your part.)

Congrats to you.

OK. I'm going to respond here. I had planned a separate post with input from my 1st follow-up and a 2nd today with a Sleep Specialist.

I've been on CPAP about 76 days. I'm tolerating the machine and have met all the Medicare requirements for usage. Since a CPAP machine doesn't measure the times you're awakened by the hoses, air, etc. there really isn't a good measure of the quality of sleep. The air leaks and hoses probably wake me up 10 times or more each night. I'm just as tired as I was before...no improvement.

At my first appointment with the Pulmonary Doc, he said I was doing "fine". He did not discuss any of the statistics. I asked a few questions and he suggested a Sleep Specialist that understood CPAP therapy better, etc. My wife had used the specialist a year or so ago and really liked him. My wife doesn't have Apnea and his suggestions to here were reading before bed, keeping logs, etc. and a bunch of other relaxation techniques that wouldn't fit well for me. I saw him today. He asked a lot of quick questions very rapidly, but wasn't a good listener. He didn't really want to hear about my Asthma, Acid Reflux, Sinunitus and other issues that contribute greatly to breathing problems. He wanted to talk about Sleep Therapy. I mentioned I had found a supportive online group, and is was obvious he didn't like the idea of the web dealing with sleep issues. In fact, he said those on such forums are those with problems not those that have been helped by the CPAP therapy. I responded, "that simply isn't correct, the majority of Senior members have experienced good results, and are simply helping the newbies that haven't".

I asked if it was really necessary to use the CPAP on an overnight trip. Obviously, he said that is the best route. However, he said with mild Apnea there is little risk that an occasional night of non-usage will not create a problem.

I asked why others feel so strongly they need to have their CPAP everyday. He indicated those are the folks that have experienced good results and feel much better with a CPAP than without. He also indicated that based on his experience only 20% don't experience a reduction of tiredness, etc. Is he correct? It makes sense to me.

What did he suggest? Well, I just switched my S9 from the CPAP mode to APAP. Using as a CPAP, the pressure seemed to remain a 9 all the time. I changed the setting to 9 - 14. He said to try that for two weeks and send him the report.
If there is no improvement, he would like to do a 3rd sleep study he described as "with a twist". That means I would sleep with the CPAP and remain at the sleep clinic the next day at which time I would be asked to take several naps during the day. I guess this is to see if there are other variables affecting my sleep.

In my opinion, I would also agree that Sleep Apnea is over-diagnosed for economic reasons. For those of us that don't "feel" the improvement, we're not "jealous" of those that do...we're wondering why we don't also "feel" any better. But, it isn't all "feel", most of us know it lessens the possibility of a stroke or heart attack and there are benefits that can't be "felt".

I just had my first sleep study, but at the neurologists appointment before-hand, my neurologist mentioned something that seems quite counter-intuitive:

The severity of your apnea is uncorrelated with how sleepy you are during the day. People with mild apnea can still be quite affected, so I don't think it's weird or odd that you've noticed such an improvement.

I'm glad it's working for you!

Tired Linda, I'm hoping my in-law will come around some day soon and find some relief.

Wolewyck,

"OSA patients presenting with mild or moderate severity, and no major comorbidities will not necessarily have low levels of sleep or psychological disturbances."

Thank you for the interesting article on this point, I was fascinated to see this study. And you're definitely right, having some relief from the sleep deprivation is like getting a monkey off my back.

Amyd, thank you. Everyone's case is different, and regardless of severity, we can all benefit from using the machines at our disposal. I no longer feel foolish, thanks!

Wonka, it's true, waking up and having to deal with mask issues and getting used to the whole process of treatment doesn't make for a restful night's sleep. I'm sorry to hear your sleep specialist wasn't particularly helpful, that's not encouraging, but it is interesting that he wants to try a third sleep study with you. I've never heard of that. What a shame he doesn't realize how helpful the CPAP forum is for new users, I often wonder about doctors who seem to know less about their specialty than their patients. Maybe he can come over to this forum and learn more about how to help people who are struggling with their treatment. I hope things straighten out for you really soon and you wake up one morning feeling refreshed and rested!

The severity of your apnea is uncorrelated with how sleepy you are during the day. People with mild apnea can still be quite affected, so I don't think it's weird or odd that you've noticed such an improvement.

Lurker, it does seem counter-intuitive, but I'm glad to hear it! Thank you!

flowergal3 wrote:
So why do I feel a bit silly? I guess because my sleep apnea is so mild, I'm wondering if the improvements I'm feeling are all a figment of my imagination, like a placebo effect? If I wasn't all that bad to begin with, how can I say I'm feeling so much better now? Wishful thinking? But then, I also wonder if the sleep study was a bit skewed, since I had such a hard time falling asleep both times and they had to give me a sleeping pill. I know I didn't sleep as deeply as I do at home, and I wonder if that had any effect on the amount of apneas that showed up on the report? But then, the sleeping pill would probably have made the sleep apnea worse, since I was more or less medicated to fall asleep, which probably should have relaxed me more than usual, causing more events.

Reading this over, I think I need to hook myself up to my machine and get some rest, I sound like a sleep-deprived hypochondriac with delusional thinking, LOL and I apologize again. Am I feeling sorry for myself because I wasn't as bad off as I thought? No, not self-pity, just a bit of self-doubt. On a severity scale, my apnea was the equivalent of having an elephant standing on my shoelace compared to many people who have the same elephant literally standing on their chest.

Even though my case is very mild, I still believe I feel better, regardless if it's all in my head or not. Or I should say, ON my head, because that's where the mask goes.

flowergal3, I really connected with your comments about wondering whether or not "it's all in my head". I have felt exactly the same. When I read about your AHI and desats my first thought was, that is not what I understand to be "mild" at all and you are doing great to begin treatment with cpap.

My results are considerably "milder" than yours and as I have read this forum I have thought that I must be either a hypochondriac or a "hose head wannabe" because I have had such great results in a very short time (started 12/29/10) with "stats" that are negligible. My first return visit with the md was much the same - with really good results right out of the gate. He did take some time to explain that although my "stats" were not even enough to qualify me for medicare (I am working on an appeal), there was enough going on in terms of my sleep architecture that would cause me to not sleep and feel lousy, uars being one of them.

Through this forum I have come to learn that there is so much more to sdb than "just" ahi's and hi's and etc. In my case I think that there is something more going on. Just thought I'd share my experience. I hope things are going great with you now and that you have some of your mask issues resolved.